AHN doctor pushes for better support, resources for grieving families who lose a baby

During National Pregnancy and Infant Loss Awareness Month, one doctor is pushing for broader access to support and resources for families experiencing pregnancy or infant loss.

It’s something Dr. Marta Kolthoff emphasizes through AHN’s Perinatal Palliative Care Program. Kolthoff leads the program, which supports grieving families by providing palliative, hospice, grieving care and other resources to families who are experiencing the loss of a pregnancy or newborn.

“As a society, we do a really poor job of addressing perinatal loss of all kinds,” Kolthoff said, who is a perinatologist and reproductive geneticist. She urges health care systems to make improvements in that department.

Perinatal loss, she said, is not uncommon — though it’s often stigmatized.

About one in four women will experience some form of perinatal loss, Kolthoff said — be it a miscarriage, which is defined as the loss of an unborn baby in the first 20 weeks of pregnancy, or a stillbirth, which occurs after 20 weeks.

The program also offers support for families who receive a diagnosis that their baby will not survive long after birth because of factors like chromosomal disorders or fetal malformations.

When AHN’s program started in 2016, it was one of the only such initiatives in the nation, Kolthoff said. Since then, awareness has spread and other hospitals have adopted similar programs, although AHN remains “at the forefront,” with a program that continues to expand.

Through AHN’s program, a team of doctors and specialists helps patients through not only their medical concerns, but also their emotional needs and grieving processes, she said.

“We become part of these families’ networks and we all become family,” Kolthoff said. “I’ve gone to funerals. I’ve gone to the births of subsequent babies who are healthy.”

They help to organize funerals for babies lost during pregnancy or soon after birth, she said, “to allow for a normal grieving process.”

They also help them to create memories with their babies during their short lives, and offer mementos from the pregnancy, like baby blankets and ultrasound photos. They can even record handprints and footprints for the parents as a way to remember the child.

“If you provide them with those opportunities to make memories, to bond, to build a relationship during pregnancy while the baby’s still alive, the patient has these to draw upon after the baby dies,” she explained. “The relationship exists — it was real and acknowledged by others.”

They give parents time with their baby after a stillbirth, to allow them to bond and make memories — rather than further traumatizing mothers by immediately taking away the baby, which used to be considered the norm and is still common practice at some hospitals, Kolthoff said.

It’s important, she said, that the parents realize their baby was “no less important than any other baby.”

Striving for more awareness, compassion

The program also offers support groups and behavioral care providers. Every member of their staff is trained in how to appropriately help families through the process and to be sensitive to their grief.

“It really is trying to create a culture change and one of much more compassion and awareness,” Kolthoff said.

All of the things AHN’s program offers should be consistently available at every health care system across the country, Kolthoff said. Every family should have access to proper health care, as well as grief counseling, experts who can help them to bond with their baby and the opportunity to have a funeral and mementos or photos.

“It needs to be the standard of care,” Kolthoff said. “If it’s something so common and so devastating, why is it not?”

During the month of October, she also urged the public at large to become more aware of perinatal loss and to learn how to respond compassionately.

“It is something that is part of this human experience,” she said. “It is something that affects all of us.”

She urged people to be sympathetic with those who have experienced such losses, and to be mindful about comments they make on the loss of a pregnancy or a baby. Telling a woman that her pregnancy was bad or that her baby was not meant to live, she said, are examples of things people sometimes say that only make the healing process harder.

“It just takes a bit of awareness, mindfulness,” she said. “That’s at the heart of the October awareness month. This is something so common and so devastating and we let people know there’s just a better way to approach this.”